Kathleen Lyons, 55, a pediatric physical therapist and mother of two from Humboldt Park, was scheduled to receive a life-saving liver transplant this past Monday.
Lyons, diagnosed two years ago with stage 4 colon cancer that spread to her liver, had been accepted for the procedure by doctors at the University of Rochester Medical Center in New York.
A former college roommate, Eileen Womac of St. Charles, made the selfless decision to donate part of her own liver to save her friend’s life.
Both women underwent extensive testing, which showed them to be a perfect match for the transplant. Everything was set.
Then. Lyons received crushing news. Her insurer, Blue Cross-Blue Shield of Illinois, declined to cover the proposed surgery, then rejected her doctor’s appeal.
“Liver transplant for colon cancer is unproven. Thus your plan cannot cover this request,” the rejection letter stated.
For Lyons, it was an unexpected blow.
“I would have been cancer-free by the end of the day,” she told me around the time she originally expected to be in surgery.
Instead, she returned to chemotherapy Wednesday, which will prevent her from getting a transplant for at least another month even if the insurance company reconsiders.
That’s a month Lyons isn’t sure she has. If the cancer spreads beyond the liver, as is likely at some point, her doctors will no longer consider her a good candidate for the transplant.
As Lyons explains, the prognosis for patients in her condition relying only on chemotherapy is poor, with under 10% of them surviving five years after diagnosis. Surgically removing the tumors from her liver isn’t an option because the damage to her liver would be too extensive.
I realize insurance companies can’t keep health costs under control if they pay for every Hail Mary surgery some aggressive doctor is willing to undertake.
But I’m convinced this is not that kind of situation. This is a case, more likely, where the insurance industry’s standard of care has not caught up with cutting-edge medical practice, leaving Lyons to die for want of a procedure insurers will soon routinely approve.
That’s disappointing from Blue Cross-Blue Shield, which I always regarded as the gold standard for healthcare coverage in our area.
For Lyons, who is a Blue Cross-Blue Shield provider in her physical therapy practice, it’s heartbreaking.
“How does anything get to be standard of care if it’s never allowed to be done?” she asks.
Blue Cross-Blue Shield of Illinois declined to discuss Lyons’ case with me, citing her privacy rights, which she had informed the company she would waive.
“We are committed to providing our members access to quality health care consistent with the terms of their benefit coverage and any applicable medical policies,” it said in a written statement. “Those policies are based on evidence-based standards of care, including, when relevant, the National Comprehensive Cancer Network guidelines.”
The company told Lyons it considers a transplant “experimental/investigational in nature” for someone with her diagnosis and therefore excluded under her policy.
Blue Cross-Blue Shield’s decision was upheld by an independent review conducted through the Illinois Department of Insurance.
Lyons’ surgeon in Rochester, Dr. Roberto Hernandez-Alejandro, pushed back forcefully.
“With the evidence we have, this is not experimental any more,” Hernandez-Alejandro said.
Most published scientific data on liver transplants in colon cancer cases comes from Norway, where different organ donation laws and attitudes make more organs available for transplant, according to the doctor. That has allowed Norwegian doctors to determine criteria for which colon cancer patients are most likely to benefit from liver transplantation, and Lyons fits that criteria, he said.
That data show five-year survival rates of 60% to 80% in well-selected patients like Lyons, Hernandez-Alejandro said.
And the procedure is being performed at U.S hospitals — where other insurers have covered it. Hernandez-Alejandro said he has done five such surgeries in Rochester and ticked off a list of other hospitals performing the operation.
“Unfortunately, this is early stages in the U.S.,” Hernandez-Alejandro said.
He said insurers initially balked at providing coverage for his other transplant patients but reconsidered after “peer-to-peer” discussions with him. Blue Cross-Blue Shield of Illinois never allowed him to plead his case for Lyons, the doctor said.
Lyons recited her medical details to me almost matter-of-factly.
Only at the mention of her two teenage daughters, Fiona and Ingrid, students at Whitney Young Magnet High School, did she get emotional.
“That’s my main concern, really my only concern,” Lyons said.
“Every milestone I can get to, I’m appreciative of.”
The next one is Fiona’s high school graduation this spring. With a transplant, Lyons thinks she could see her daughters through college.
She plans to apply again for the surgery. I’m rooting for her to reach more milestones.
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